July 7, 2007

Our Leiah Rose

We had a major epiphany this week regarding our oldest daughter, Leiah. When I was carrying her, the doctor noticed at our 22 week ultrasound that she appeared smaller than normal, so we did another one around 28 weeks or so. The next day I got a frantic phone call from my husband, who had been contacted by our doctor and for some reason couldn't get in touch with me. We had to come in right away!

She explained that little Leiah was not growing according to the normal rate, and we were in a serious situation. I had to quit my job, be on semi bed rest, come see her twice a week for ultrasounds and non-stress tests (which were quite the opposite for me) and if at any time the baby appeared to be in distress, she would have to be taken out and be air lifted to Dallas. ( we live about 80 miles away) As long as she continued growing, we would keep her in the womb for as long as possible.

On January 3 of 2003, we went in for a routine test and scan,and all went well until her heart rate plummeted from 135 to 80. The nurse ran out of the room yelling for the doctor, and she looks at the test and says very calmly,'"Well, we're having a baby today." About an hour later I was lying on the operating table while they were cutting me open like a fish to get Leiah. I went numb, no feelings at all, just steeling myself for a tiny baby and possibly no crying. Out she came, crying and not as tiny as I thought at 4lbs 1oz and 17.5 inches long. She made it to 37 weeks, which is considered full term. YEA! I saw her little face for about 20 seconds before she was taken to the nursery where they monitored her breathing for about 8hrs. I finally got to hold her after that.

Anyways, after 10 days in the hospital, she was eating and breathing well, gaining weight and we went home. From then on she was healthy, gained weight and did great. At about 6 months I noticed she wasn't grabbing at things or trying to sit up or babble. By the time she was 9 months I was really concerned, but her pediatrician didn't seen any reason for alarm because she was so small. Her development was progressing, just very slowly. At 16 months she wasn't walking or crawling so we started physical therapy-- AWFUL! Leiah was very attached to me, and absolutely freaked out when others touched her and when I was out of sight. We stopped that after 6 weeks. She started walking not too long before her second birthday. In the meantime I had learned about ECI- Early Childhood Intervention, and was able to get speech therapy in our home twice a week. Now that she was walking, speech was next.

When she turned three she started going to a specialized preschool in the public school called PPCD. (can't remember what it stands for) This has helped her so much socially. She is not attached to me anymore and interacts very well with people. Still no words. In January, I took her to a doctor that specializes in delayed children. She said Leiah had high functioning autism and mild mental retardation. I believed none of that. In April we had an MRI because her eye doctor thought something looked weird in the optic nerve, were told she had hydrocephalus, which is excess spinal fluid on the brain, went to a neurosurgeon, he told us nothing was wrong with her brain, went to a geneticist and had chromosome testing done.

Monday morning I got the call that something was found and we needed to come to the office. Leiah has something called Trisomy 9. Apparently, in the 9th pair of chromosomes in some of her cells, she has a third chromosome instead of just two. Only 10-15% of her cells in her body have this, which is why she seems mostly normal, just a bit slower. Children whose cells all have the third chromosome cannot live, and many children who have this trisomy 9 die in utero or are very disabled. The hardest part about this news is wondering if me or my husband carry this in our genes and if future children could get this as well. We could get tested if we wanted, we may someday.

We are currently checking into specific nutrition for her cells to see if they can be repaired. Apparently children have a hard time getting their brains to connect with their voice boxes to get the words out. This explains why I know she understands me and is very smart, but can't seem to get anything to come out of her mouth. She does sign language which I taught her as a baby, but is very limited in that as well as words.

I will be honest and say I didn't take this news well. I was surprised that anything was found, and after 4.5 years of wondering what was going on, we finally had an answer. We've been through a lot with her, not to mention we have two other little ones. I can see God's providence in this though, when Leiah was 3 months old, I found out were having another baby. Alexa was born a week before Leiah's first birthday. Alexa progressed normally, and because she was sitting and crawling and babbling, Leiah copied her. Alexa would take things away from Leiah and bite and fight with her, and at first Leiah would just cry and take it, then all of a sudden it occurred to her that she could fight back. Having Alexa was the best thing for Leiah, though it made things very difficult for me :)

It is strange to finally have a name for whatever has caused her delay in development. But now we know, and can move on. She was created for greatness and something special I believe, and many others have said so. Thank the Lord for such a precious, happy little girl. I love you Leiah.

This was in July 2006- Leiah was 3, Alexa 2, and Sarah was 4 months- the whole crew!


Thirdtimemomma said...

Praise God you found and answer! Most definitely He has a plan for her. She is quite a beautiful little girl appears very alert. And what a helper to you too! ;)

Thirdtimemomma said...

Thanks for your post! :) Showers and tubs is a great chore for a 3 year old! Ours gets so scummy I rarely have the children do it (shrug). But its a good idea. I do have them (including the almost 2 yo) wipe down sinks and around the toliet. Especially the boy (4yo)! :) I really enjoy your blog. :) My favorite was your NT post. :)